My Cancer Roller-Coaster

by Erin PottgenSurvivor, Breast CancerApril 5, 2021View more posts from Erin Pottgen

I remember the day I was diagnosed like it was yesterday. It was like someone turned off the volume in my head and I could see her mouth moving but I could not hear the words that were coming out. Even if I had heard them I don’t think they would have meant anything to me.

I hated her.

I hated that she was the one to give me this news. I hated that she had tears streaming down her face when she told me. I later found out that she had already told my mother the day before and that made me hate her even more. I would never see her again after that day.

I remember a nurse coming in the room and putting a tourniquet on my arm and sticking me hard with a needle to suck the cancerous blood from my arm. I didn’t know or even care to know why she was doing this, but I later found out it was to test for a genetic mutation that, of course, I had. After the nurse took the dark red tubes of liquid out of the room, only my mom, the hack doctor, and I remained. She continued to talk while I continued not to listen. I kept repeating the word “cancer” over and over in my head. “I have cancer. I have breast cancer. I fucking have breast cancer. Cancer. Cancer. Fucking Cancer.”

After the doctor gave me some pamphlets and some bullshit about what to do next, I put my clothes back on and left. My mom and I didn’t say much as I don’t think there was much to say. I had cancer. It’s not like I had a sinus infection and we could stop by the pharmacy on the way home and pick up some Mucinex and be done with it. Shit, I would have rather her told me I had chlamydia. At least then I could get some antibiotic and be done with it. Never in a million years did I think I would want someone to tell me I had chlamydia. Guess all those years of practicing safe sex really paid off for me now. Didn’t help keep me from getting cancer though. Nothing could have stopped this. At least that’s what I told myself.

On November 1, 2007, at the age of 24, I was diagnosed with triple negative breast cancer that had spread to my lymph nodes. I also was diagnosed with the BRCA 2  genetic mutation that causes breast and ovarian cancers. Nothing like saying you have cancer, oh and yea, you also have this genetic mutation that probably caused it and it will probably do it again. But we can’t tell you when it will surface again, but it probably definitely will. Good luck with living with that mind-fuck for the rest of your life!

My total treatment consisted of 17 rounds of chemo, a lumpectomy with lymph node dissection, and 30 rounds of radiation and took about a year to complete. A shitty fucking year, I might add. A year of gaining 25 pounds, feeling sick constantly, being exhausted, feeling achy all over, and losing all of my hair including my eye brows, eye lashes, and even nose hairs. Yes, chemo even fucks with the tiniest of hairs and can’t even leave you with that. I guess the silver lining was I didn’t have to wax my upper lip for a year. Although, I would gladly take the pain of hot wax over the feeling of death from chemo any day.

I thought the emotional roller-coaster I was on during active treatment was a nightmare, but let me tell you, I was wrong. So very, very, very wrong. Throughout treatment, I had been riding the turtle at Kennywood. The post-treatment roller-coaster was more like the fucking phantom’s revenge.

There was no bell when I finished chemo, that was not a thing in 2008. I went to chemo alone that day. My final treatment, I sat there not fully understanding what was about to happen in the coming days, months, and years. I was excited, or so I thought. No more feeling like shit. No more exhaustion. I would get my hair back, and according to literally everyone, it was going to grow back thicker and fuller, and maybe even curly, and definitely black or some really dark color. Fucking liars. My hair grew back thin, fine, and fucking gray. I hate my hair. I hate cancer.

When I got to my parent’s house that day, they had balloons and streamers and cake. It was a party. But something was missing. Something was off. What was it? Oh right, my friends. Only one of my friends was there. One. And he was more like family to be honest. So here I am on my final day of chemo, I can barely walk or use my arms because the chemo poison had made all of my joints stiff and achy, as I lay on the couch watching tv and having a friend literally feed me my cake because I couldn’t lift my arms. I cried. The tears streamed down my face while I ate the chocolate cake that I could barely taste because the chemo had taken away my taste buds. No one came. No one wanted to celebrate with me. No one ate cake with me. No one cared. This was the beginning of the phantom’s revenge.

No one prepares you for what life will be like post-treatment. And for me, life after treatment was exponentially worse emotionally than life during treatment. When I was in treatment I was on a mission. A mission to live. Tell me what I need to do and let’s fucking do it. Here’s both arms, stick ‘em with IV’s, and let’s get this shit going. Chemo and radiation kill cancer so my thought was that while I was in treatment it couldn’t get worse. I was safe. I was sick and in pain and couldn’t taste a fucking thing, but I was safe. Let’s just live here forever. But that’s not how it works. Now I sit here with no IV’s and no poison running through my veins and that, to me, means that my genetic mutation can decide to fuck with me at any time and come back, and probably this time with a fucking vengeance. What do I do now? Who do I talk to about this? Am I the only one who feels like this? Are there other people out there like me?

I searched for support groups but all I could find were breast cancer support groups and they were filled with older women who I had nothing in common with. I wanted to talk to people who were like me. I was young. I was single. I was new to the workforce. I was trying to figure life out as a young adult cancer survivor. I saw a therapist, but that wasn’t much help. I needed to talk to people like me. I searched on and off for years trying to find some resources. Finally, in 2013 I found Stephanie Scoletti and she introduced me to a support group formerly called YACS, now Young Adult Survivors United. From that moment on, my life has never been the same. I met other survivors who, like me, were afraid. I would talk, and talk, and talk, and they listened. And they nodded. And they said “yes, me too!” And we supported each other. Each month we would sit in Panera and talk about our fears and pains and scars and long-term side-effects of treatment. We would laugh and cry and scream… you know, feel all the feels. We started having social events where our friends and families would join us and we would have cook-outs, go bowling, play arcade games, make candles, throw axes, and countless other events. We were bonding. We were friends. We were family. We ARE family. And although the pandemic has turned our worlds upside down, YASU has remained stronger than ever. We have weekly virtual support groups and virtual social events. We are still here. We are still together.

When I look back at my cancer journey, I can now see that it wasn’t the treatment that saved me, it was YASU that saved my life. I am here today to tell my story because of the support I receive from the group. I was in a dark maze with no way of finding the exit, but my YASU family showed me the way. They showed me how to live my best life, be the best me, love others, and most importantly, how to love myself. 13 years after the initial diagnosis, and 11 surgeries later (all within the past 6 years), the scars on my body look like a fucking roadmap to Cancertown. They have removed every part of me that makes me a woman. They took both of my breasts, my ovaries, and my fallopian tubes. The body that remains is a shell of who I once was. I cannot look in the mirror without being reminded of all that cancer has taken from me, but my YASU family is teaching me how to love my scars and to remember they do not define me. I define me. I am not there yet, but I know that in time, and with the support of my cancer family, birth family, and marriage family, I will one day look in the mirror and be proud of what I see. Until that day, I welcome the tears and know that no matter how fucked I look, I am still here.

Erin Pottgen

I can’t fully tell my story without telling how YASU not only saved me, but it saved my marriage. My husband and I were not together when I went through my cancer treatment. We met a few years later and the cancer stuff was the most difficult obstacle we faced. He had never really been exposed to a cancer survivor and didn’t understand the mind-fuck it plays on you. He would get frustrated with my fears and anxiety and couldn’t understand why I was letting this disease control me years later. I didn’t know if we would last. He would never get it. He would never understand that cancer fucks with you for life. It is that little spot on the stove that no matter how hard you scrub or what cleaning agents you use, it never goes away. It just sits there laughing at you, until you finally break down and buy a new stove. I don’t get to buy a new body. I have to live with this stain forever. If we were going to last, we needed help and YASU did just that. Not only did YASU save us, but it brought us closer together. My husband, the love of my life, never understood what I was going through and how to deal with it, but after attending socials, meeting other members, and attending the caregiver support group, he knows exactly how to best support me and support himself. He stands by my side every single day and showers me with unconditional love and support. He no longer tells me to stop crying, instead he extends his shoulder and wipes my tears. He no longer tells me not to be afraid. He encourages me to be me. He encourages me to feel my feels, even if that means dealing with me screaming and crying for no apparent reason. I can’t imagine life without him. He is my best friend. He is my love. He is my forever.

Even though I have been traveling my cancer journey for 13 years, it is only just the beginning. I started riding this roller-coaster alone, but now my coaster train is filled and there is even a line of people waiting and wanting to ride alongside me. YASU did this. YASU helped me. YASU saved me. This has been one hell of a journey, but it has taught me many things, and there is one thing in this crazy world I now know for sure: I will never eat cake alone again.

 


All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/. 

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